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IBD and Your Lifestyle

Ellen J. Scherl, MD

Introduction

In addition to taking your medication and watching your diet, there are many other ways to manage your wellness that can influence your inflammatory bowel disease (IBD). This newsletter will focus on lifestyle choices you can make to help you control IBD symptoms, limit its impact on your activities, and lengthen the time between flare-ups. Specific sections include exercise, stress, smoking, travel, and sexuality and reproductive issues.

Exercise

While exercise cannot control IBD and has not been systematically studied in IBD patients over long periods of time, staying fit will help you respond better to flare-ups. Even though you may not always feel like exercising, regular exercise will increase your energy levels and decrease the stress and depression often associated with IBD1. Exercising doesn't have to be strenuous and doesn't necessarily mean regular trips to the gym. You can increase your physical activity by walking or using exercise videos in the privacy of your home. If you have been sedentary for awhile, start slowly and gradually increase the intensity and duration of your activity.

Aerobic exercise, like walking, hiking, jogging, biking, swimming, and skating, can help counter some of the side effects of IBD. For example, it can reverse muscle weakness and wasting and also prevent calcium and protein loss2. While many people with IBD enjoy vigorous exercise, some find that aerobic exercises involving bouncy movement, like running, increases cramping, nausea, vomiting, and diarrhea. For these individuals, walking, swimming, skating, or cross-country skiing may be more tolerable. To prevent injury to your joints and muscles, start with a 5- to 10-minute low-intensity warm-up period. Likewise, ending your exercise session with a 5- to 10-minute cool-down period will allow your breathing, heart rate, and blood pressure to gradually return to resting levels.

If you are taking glucocorticoids, resistance training may slow or reverse the progression of muscle and bone loss associated with those medications3. Such training typically involves the use of free weights, weight machines, or elastic bands. It is important to get proper instruction in the use of exercise equipment to avoid injury. When working out in a gym, avoid touching your face and remember to wash your hands carefully before heading home, especially if you are taking immunosuppressive medication. Weights and other equipment can be sources of disease-causing germs.

Remember that IBD increases your risk of dehydration, so be sure to drink plenty of fluids before, during, and after exercise, even if you don't feel thirsty. Water is a great choice, or you may want to try commercial sport drinks that are rich in sodium and potassium. It may help to avoid eating solid foods for several hours before aerobic activity.

Check with your doctor before beginning any exercise program. Although most types of physical activity are fine for people with IBD, your physician will know whether any special considerations apply to you based on your specific medical history. For example, if you have been on corticosteroids for a long time, running may place too much stress on your bones at the outset and you may need to begin your exercise program with a lower impact activity.

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Stress

Although there is no evidence that stress causes IBD, IBD can certainly cause stress! Stress is a common side effect of any chronic illness with symptoms that come and go throughout life. When you are feeling stressed, your normal digestive process changes4. Your stomach empties more slowly and secretes more acids. Stress can also speed up or slow down the movement of food through your intestines and cause changes in your intestinal lining. Thus, stress can aggravate your symptoms, resulting in a cycle of flare-ups that may include increased abdominal pain or diarrhea.

Relaxation strategies can help you control stress and better manage your disease5. This can be as simple as setting aside at least 20 minutes each day for a calming activity, like reading, listening to music, soaking in the tub, playing a computer game, or working on a crossword puzzle. The main thing is to pick an activity that you find relaxing. Many people find that regular tai chi, yoga, or meditation helps to relieve stress. Look for classes in your community or books and tapes that teach you how to practice at home. Biofeedback is a formal stress reduction technique that helps you achieve a relaxed state by reducing muscle tension and slowing your heart rate using a feedback machine. It is usually taught in clinics and medical centers. With practice, you can learn to achieve a relaxed state without using the machine.

If you are experiencing significant, ongoing stress, you may find it helpful to talk to a mental health professional. Some patients benefit from antianxiety or antidepressant medications. Your physician can refer you to the appropriate mental health professional whether that's a social worker, psychologist, psychotherapist, or psychiatrist. It is important to choose a mental health professional who is familiar with IBD and understands some of the psychological challenges involved.

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Smoking

People who smoke or have smoked in the past have a higher risk of developing Crohn's disease than do nonsmokers. If you have Crohn's disease, smoking can increase the number of flare-ups you experience, as well as your need for surgery and aggressive treatment.6

Paradoxically, the risk of developing ulcerative colitis is higher in nonsmokers and former smokers than in current smokers, and the onset of ulcerative colitis sometimes appears to coincide with smoking cessation.7,8 Researchers think that the nicotine in cigarettes may have a protective effect on ulcerative colitis. More specifically, nicotine may affect the muscle that lines the large intestine, slowing down the movement of waste. Smoking cessation is often associated with a flare of ulcerative colitis. Nicotine is also the substance in cigarettes that makes them highly addictive, which is why many people who smoke have trouble quitting despite the serious health risks, like cancer and heart and lung disease. That is why smoking is never a good idea, even if you have ulcerative colitis.

Several studies found that nicotine patches, which smokers wear to help them quit, helped decrease ulcerative colitis symptoms during a flare-up. However, patients using the patches commonly reported negative side effects, such as nausea, light-headedness, and headache.9,10 Unfortunately, nicotine patches do not seem to help patients with ulcerative colitis stay in remission.11

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Travel

Traveling with a chronic disease may seem daunting, but there is no reason to avoid a vacation or business trip just because you have IBD if your symptoms are under reasonable control and you feel well enough to travel. By planning ahead and taking some precautions, you can leave town or even the country and stay healthy and comfortable. Remember to take your medications along with you on your trip.

Before You Travel

Discuss your travel plans with your physician and be sure to take along his/her phone number. Your physician may also be able to provide you with the name and phone number of a doctor in the area you'll be visiting, as well as a letter describing your medical condition should you need medical care while you are away. You may also want to ask for written care plans to follow in case of a mild, moderate, or severe relapse.

Also check in with your pharmacist before you leave town. Be sure to bring more than enough prescription and over-the-counter medication for your trip. The same is true for any supplies you may need — always pack extra. This will give you peace of mind if your return trip is delayed for any reason. It is also a good idea to bring along copies of all prescriptions, including generic names and foreign brand names if you are traveling to another country.

Finally, call your health insurance company to confirm your coverage while you travel. If you are not covered when traveling, look into getting travel insurance or short-term insurance. Your insurance agent may be able to give you a referral or your credit card company may offer health insurance while you travel.

Traveling by Car

If you are traveling a long distance by car, contact local tourist boards or an auto club to find rest stops on your route. If there are no rest stops along the highway, note the locations of busy intersections where you are most likely to find a restaurant or grocery store with bathroom facilities. If you are driving through remote rural areas, you may want to consider keeping a portable toilet in the trunk of your car.

Traveling by Plane

If you are traveling by plane, make reservations in advance and request an aisle seat close to the bathroom. If a meal will be served on your flight, ask about the availability of special meals if you have any dietary restrictions. Always pack your medication (in its original container) and other necessary supplies in your carry-on bag, so you have it with you at all times. Due to enhanced security measures most liquids, gels, lotions and other items of similar consistency will not be permitted in carry-on baggage. However, prescription medicine with a name that matches the passenger's ticket, up to 5 oz. of liquid or gel and up to 4 oz. of non-prescription liquid medications, are permitted. Additional amounts of liquid medications, in excess of the permissible amount, should be packed in checked baggage. You may also want to include a change of clothes, wet wipes, and any other things you might need in an emergency or if a bathroom is not well-stocked. If you find yourself needing the bathroom urgently and there's a line, explain your situation to a flight attendant and request assistance.

Avoiding Travelers' Diarrhea

Everyone is at increased risk for gastrointestinal problems when traveling to less developed countries where there may be inadequate sanitation. Such problems are typically due to intestinal infection caused by bacteria, parasites, or viruses in contaminated food or water. If you have IBD, you need to be especially careful about the food you eat and the water you drink.

Here are some tips to keep you healthy:

• Don't drink tap water unless you boil it first. This includes any drinks containing ice cubes. Instead, look for bottled water and use it even for brushing your teeth. Don't use bottled water that you did not either break the seal yourself or witness someone else breaking the seal.
• Avoid salads and other raw vegetables.
• Eat fruits only if you can peel them.
• Make sure that dairy products like milk and cheese have been pasteurized.
• Don't buy foods from street vendors.
• Eat only thoroughly cooked meats.

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Sexuality And Reproductive Issues

Sexuality

Even though IBD is a digestive disease, its symptoms and treatment can have an impact on your sexuality. Side effects can occasionally be a frustrating experience for both you and your partner. Remember that healthy adult relationships are more than just sexual gratification. Finding a way to work through this challenge can bring you closer together as a couple.

• IBD Symptoms and Sexuality

  As is true with many chronic illnesses, when your IBD flares-up, you are probably left feeling physically uncomfortable and emotionally drained. This may not be the best scenario for making love, but is also not a good reason to give up on your sex life altogether. Try talking with your partner about strategies for overcoming barriers to sexual intimacy. Common issues that can interfere with sexual desire often include pain, diarrhea, fear of incontinence, lack of energy, depression, and poor body image. Don't wait until you're not feeling well to broach these issues. Instead, use periods of remission as an opportunity to strategize how to navigate your relationship through flare-ups. Remember that there are ways to be sexually intimate that don't involve sexual intercourse. Your success will depend on your openness, creativity, and determination.

  If you are in the early stages of a relationship with someone, you will need to determine when and how to share information about your IBD. It's usually best to wait until after you feel a strong emotional connection with the person, but before you're on the verge of physical intimacy. Start by keeping it simple. You'll have the opportunity for many more conversations as your relationship progresses. Try to share your story with honesty and confidence, not anxiety and pessimism. People you tell will take their cues from your attitude.

• IBD Medication and Sexuality

  The medications typically used to treat IBD do not affect sexual desire or performance. One common exception is steroids, which can indirectly affect sexuality due to side effects like acne, increased hair growth, and weight gain. Steroids can also result in mood changes, which can strain interpersonal relationships. The good news is that these side effects are temporary and that the need for steroid therapy is usually short term.12

• IBD Surgery and Sexuality

  About 75% of people with Crohn's disease and 20% to 25% of people with ulcerative colitis will have surgery at some point in their lives.13 Surgery for IBD is briefly described in the newsletter titled "The Clinical Course of IBD" by Dr. Abreu and will be discussed in more detail in a future newsletter. As is true with any major surgery, you should avoid strenuous activity, including sex, for several weeks following surgery for IBD.

  IBD surgery sometimes involves a procedure called an ostomy, in which fecal matter is diverted to exit your body through an opening in your abdominal wall, instead of through your rectum. Typically, a bag (also called an "appliance") is attached to the opening (also called a "stoma") and automatically collects waste as it leaves your body. Alternatively, part of your small intestine is used to create an internal pouch that holds waste until you insert a tube into the opening in your abdomen to empty it.

  Most people find that the immediate post-operative period tends to be most challenging. This is typically due to depression; surgery-related medication; and anxiety about how your body looks, the possibility of odor, and the security of your bag or patch. Remember that you're still the same person you were before the operation, and hopefully even healthier.

  Following surgery, you may not experience any sexual feelings for days or even months. Let your body recover and learn to manage your bag or pouch before thinking about resuming sexual intimacy. Remember to be patient and take time to communicate with your partner. It is important to talk about how you are feeling about intimacy and sex. Each subsequent intimate encounter following your surgery is likely to become easier if you approach sex with openness, confidence, and a bit of humor.

  If your ostomy requires you to use your bag, try wearing a smaller one with a cover during lovemaking, and be sure to empty it beforehand. If you have an internal pouch, you may want to place a patch over the opening during lovemaking. If either the bag or patch seems to be in the way during intercourse, experiment with different positions.

  If you or your partner find that you are having difficulty expressing feelings or concerns related to the impact of your ostomy on you and your sex life, seek professional help. Your surgeon or ostomy nurse should be able to refer you to a gynecologist or therapist.

  In some rare instances, IBD-related surgery (for example, removal of the rectum) can result in injury to the pelvic nerves. For men, this could impair erection and ejaculation; for women, it could result in decreased sensation during intercourse. Women may also find that removal of the rectum causes other internal organs to shift position, which might cause pain during intercourse.

Fertility

Neither ulcerative colitis nor inactive Crohn's disease will affect your fertility. However, both men and women with active Crohn's disease may experience a slight decrease in fertility. This is most commonly due to malnutrition and can be reversed with a return to a healthy nutrition status.

Most drugs used to treat IBD have no effect on fertility. One exception is sulfasalazine, which causes reduced and abnormally shaped sperm in men.14 Fertility returns to normal within two months of discontinuing the drug.

As described above, when surgery for ulcerative colitis involves removing the rectum or anus, there is a rare chance that reproductive problems may result. For example, surgery in a woman's pelvic area can lead to scarring and adhesions. This could affect the fallopian tubes and make it difficult to conceive. Men who have their rectum removed face a very slight risk of impotency and problems with ejaculation.15

Pregnancy

IBD is unlikely to have any effect on your pregnancy or fetus if your disease is in remission when you conceive. However, if your disease is active at conception, it is likely to remain active or worsen during your pregnancy. With ulcerative colitis, the worsening usually occurs during the first trimester; with Crohn's disease, the worsening usually occurs at the end of the third trimester and after delivery. If ulcerative colitis or Crohn's disease becomes active while you are pregnant, you will have a slightly increased risk of miscarriage or premature birth. Therefore, it is important to treat flare-ups quickly. In general, it has been found that treating a flare-up with medication carries less risk than continuing a pregnancy without treatment, however some drugs (for example metronidazole) should be avoided during pregnancy. Methotrexate is contraindicated.16 Be sure to discuss your medications with your physician before you get pregnant.

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Summary

Living with IBD may feel overwhelming at times. However, living well by taking your medication as prescribed, watching your diet to avoid aggravating foods and ensure solid nutrition, getting regular aerobic exercise, taking steps to manage your stress, and planning for challenging aspects of life with IBD such as travel puts you in charge of your disease and your life. No one can promise you a life without flare-ups. No one can assure you that you will never need surgery. But you can take charge of the rest of your life and be healthier and stronger so that you are not laid so low if and when these events do occur. You have a long life ahead of you. IBD is a part of your life and must be taken into consideration and managed through sound medical care and rational adjustments to your lifestyle. If you take care of your IBD, it will take care of you.

This information has been reviewed and approved by CCFA's National Scientific Advisory Committee.

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13. Clinical Course of IBD by Maria Abreu
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The next newsletter in this series by Ellen Scherl, MD, will discuss lifestyle issues and things you can do to help manage your IBD and the effect of medications. To sign up for future newsletters click here.

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